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Patients Whose Final Wishes Go Unsaid Put Doctors in
a Bind
By
N. R. KLEINFIELD Do you know your name?" the doctor asked. The man knew his name. "How old are you?" the doctor said. He thought and thought, then offered, "About 59." He was in his 80's. "What month is it?" "February." It was late June, in the 90's, so sweltering that someone had just arrived with heat stroke. "Do you know where you are?" "In New York City," he said. "Across from South Ferry." He was in the Bellevue Hospital Center emergency room, a long way from South Ferry, amid a bleating chorus of voices. He had been brought in from a nursing home because of a seizure scare. Quickly, he was swallowed up by the constellation of procedures necessary to assess his condition — needles in his veins, an EKG, a CAT scan, anti-seizure medication. On and on. Patients like the elderly man show up virtually every day in the Bellevue emergency room, and with increasing frequency at hospitals throughout the country, sometimes in even more dire condition, unable to speak or move. Doctors find themselves wrestling with what to do with such damaged individuals. The marvels of modern medicine have generated a swelling population of nursing home patients in demented states, riddled with disease, not competent to decide what more they want from doctors and their machines. As was true of this man, few have done planning to specify what, if any, additional care they desire as their lives tick away, and they can no longer be reached. Many have no close relatives to speak on their behalf. As the country ages and the ranks of the demented expand, the problem looms ever larger. It is particularly persistent in New York, which has a poor record of persuading people to adopt advance health care directives and has one of the strictest laws in the country on when doctors can stop healing. "They send these patients to us to treat, and we do them a disservice," said Dr. Lewis R. Goldfrank, the director of the Bellevue emergency room. "We do things for them I wouldn't do for my own mother. The problem is, we don't know how to die in America." Dr. Goldfrank was dismayed that the elderly man was there. "There's nothing I can offer this man," he said. "But when he gets here, I have to do something." Of the broader problem, he said, "This is not illegal, but it's abuse. It's legal abuse of patients." The man that day had severe dementia, existing in some ghostly nether land between life and death. He had arrived from the Coler-Goldwater nursing home on Roosevelt Island. If many patients like this could communicate their wishes, Dr. Goldfrank says, they would just want to be left alone, spared further suffering and the indignity of grueling procedures to assure their health. These cases feed end-of-life futility debates among doctors and those who care for the elderly. Joan M. Teno is a professor of community health and medicine at Brown University Medical School whose research focus is how older, frail people who are dying are cared for in this country. "What happens to the unrepresented person in the nursing home is a humongous problem that we haven't really dealt with," she said. Ms. Teno said that government numbers for 1999, the latest available, indicate that nationwide only 35 percent of people with severe cognitive impairment have an advance directive. Kentucky has the best record, she said, with about two-thirds of its severely impaired population with advance directives, and Mississippi is worst, with 12 percent. New York State stands at 26 percent. State law varies and is often murky on how much flexibility doctors have in treating ailments of demented or vegetative patients whose desires are unknown. New York law requires that doctors have "clear and convincing" evidence of a patient's wishes before withholding treatment. Doctors say that in practice, this means that if someone has done no advance planning, they usually feel compelled to do all they can. Many doctors would like New York law relaxed so they have more say in situations they deem futile. But that enters immensely complex and controversial territory. When is care futile? What are the features of a life worth prolonging? As Dr. Maureen A. Gang, an attending doctor in the Bellevue emergency department, put it, "Grandma might have profound dementia. But a relative might say, `Grandma seems very happy when she watches Mister Rogers. She giggles.' How do you decide what value to put on that life?" Both doctors and advocates for the elderly agree that if more people specified their desires earlier, then significantly more people would get only the care they want at life's end. Ms. Teno said doctors do a poor job of discussing advance directives with patients, and said she feels the country would benefit from a sizable public awareness campaign. Dr. Eric Manheimer, Bellevue's medical director, said: "There is a wide recognition in the medical community that it's a large and urgent problem that's not going to go away. It's sometimes hidden from people until it happens to someone in their family." This tension is lived out every day at Bellevue. A close relationship exists between Bellevue and Coler-Goldwater Specialty Hospital & Nursing Facility, both part of the Health and Hospital Corporation. Bellevue is the primary emergency room that serves the patients of Coler-Goldwater, an acute care facility on Roosevelt Island that has 1,400 nursing home beds filled with the very ill. Dr. Goldfrank estimates that his emergency room averages two patients a day from Coler-Goldwater for which care is given that he feels is futile and harmful. "In the old days, we used to say that pneumonia was the friend of the old man," Dr. Goldfrank said. "It would get him out of this mess." In the modern world, an advance directive is the friend of the old person. But most don't have one. For Dr. Wendy Huang, the case that really got to her was the old woman and the legs. Last August, a woman in her 80's arrived at Bellevue from Coler-Goldwater. She had severe dementia, was bed-bound, had no relatives or advance directive. She had been sent over because of a fever. Her feet had developed gangrene. Dr. Huang, a third-year resident in emergency medicine, treated her. Dr. Goldfrank was the attending physician. He recognized that she would die without surgery on her legs. But he also concluded she would die soon evenwith the surgery. He saw no point. But he felt he had no choice but to refer her to the surgery department. It decided to amputate both her legs below the knee. Several days later, while still in the hospital, she died. "I didn't see how we were going to improve anything by amputating her legs," Dr. Huang said. "I thought it was more humane to just give her antibiotics. I thought the outcome would have been the same." She talked to Dr. Goldfrank about the experience, and that led to conversations between Bellevue and Coler-Goldwater about these end-of-life cases. Both places want to increase the number of advance directives. Paperwork itself, the doctors said, was sometimes erratically transmitted, and directives that did exist were not updated. Susi Vassallo, another attending doctor in the E.R., said, "Going to the hospital is not necessarily a humane activity." She mentioned that almost all of these elderly patients are "hard sticks," meaning it is difficult to get a needle into a vein to draw blood. Sometimes, doctors have to do a deeper stick in the neck or chest — a riskier and more painful procedure. Dr. Gregory Mints, who is in Bellevue's medicine department, mentioned a man who is treated frequently. He had tried to hang himself and wound up in a vegetative state, unable to move or talk. He has no family or advance directive. He arrives with infections, gets treated, goes back, returns. "He can't communicate," Dr. Mints said. "For all practical purposes, he is dead. Rats, you know, die of kidney failure. Humans die of heart attacks. That's the common way we die. We have the technology to fix the heart, so as a result we rot. We just rot away. These people come here and, in many cases, we have to torture some of them." Dr. Yolanda Bruno, the medical director at Coler-Goldwater, said that she and the Coler-Goldwater doctors feel the same as the Bellevue doctors — frustrated. Roughly half of the Coler-Goldwater patients have cognitive dysfunction, and the vast majority have no advance directive and often no close relative. About a year and a half ago, Dr. Bruno said, Coler-Goldwater systematically tried to raise the number of advance directives among its lucid patients. She said the proportion was significantly increased. Most of these, though, were Do Not Resuscitate orders that stop doctors from trying to revive them if they go into cardiac arrest. But those orders do not otherwise allow doctors to withhold medical care. Only a small fraction would agree to broader directives. "Most of the people in the nursing facility who have decision-making capability don't want advance directives," Dr. Bruno said. "We found they didn't want to think about it." Getting people to draft advance directives is a formidable undertaking. It compels people to imagine what state of life they would accept, to contemplate debilitating illness and damaged minds, in essence, to address the unthinkable. Even when you assign a surrogate, the complexity does not end. For cultural reasons, some people are unwilling to give up on life, no matter what. Doctors speak of relatives who keep demented individuals alive to collect pensions. One doctor told of the ex-wife of a demented man who was his health care proxy. The divorce had been bitter. It was clear to the doctor that she wanted him subjected to all the care that was available — stick him all you wish. She wanted him to suffer as long as possible. And so the ambulances wheel in the patients. Their bodies get worked over so they can live another day or another month or another year in a world most people can not reach or fathom. As was the case of the elderly man who arrived at the emergency room thinking it was a hot day in February. Dr. Goldfrank discussed the case with a neurology resident, who said there was nothing to do for him and suggested that they "load him and send him back." Dr. Goldfrank admitted to the resident that there was little to do for "this human being with this amount of brain. We allow D.N.R.'s. We need to adopt Do Not Do Furthers." But he said he had already discussed the man with Coler-Goldwater, and they weren't comfortable accepting him back without further observation. "There's nothing to preserve," the resident said. "You're right," Dr. Goldfrank said. "There's nothing to preserve." He was admitted to the hospital. The man's closest relative lives in another city and has not seen him since 1995. Now and then she sends him candy. No one had discussed establishing a care plan for him. Dr. Alexis A. Halpern, a third-year resident in the E.R., spoke to her and suggested that she think about the subject. While the man was still in the E.R., saliva got into his lungs, and a tube had to be inserted through his mouth for him to breathe. His blood pressure dropped. A central line was inserted through his neck to provide fluids and medication and to take blood samples. He was transferred to an intensive care unit, connected to a ventilator. He developed pneumonia. He was swept up into the regimens of hospital stay. X-rays were taken, medications administered, a catheter inserted, blood samples drawn multiple times a day. "There's no question we did too much for him, in his fragile state, that we made him worse," Dr. Goldfrank said. "With someone like this, it becomes a question of what is doing good?" Three weeks later, he was still hospitalized, just lying there. A feeding tube was being put in. What if he had never come? Who knows. He might have died, perhaps mercifully. His condition might have stabilized without his having to endure the ordeal in the hospital. It is clear what happened to him. What no one knows is what he would have wanted.Copyright
© 2002 Global Action on Aging
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